"WHAT?! You can die from epilepsy?"

That is the response I get from almost everyone. People are shocked to learn that one can die from epilepsy. I myself was even ignorant. I was always scared that Karissa could die from a seizure but I never thought it would happen. In all honesty, I didn't think one could actually die from a seizure. Shortly after Karissa's death, I remember saying to Mark, "you aren't supposed to die from seizures." It wasn't until we lost Karissa from epilepsy, that I became aware of something called Sudden Unexplained Death in Epilepsy. Sadly, seizures can be fatal, especially the rare status epilepticus, a continuous convulsion lasting longer than 10 minutes. Karissa died in her sleep, the victim of an epileptic seizure. Karissa, like many others, suffered from what is called Sudden Unexplained Death in Epilepsy (SUDEP).
   ---------------------------------------------------------------------------
Why something needs to be done NOW!

Every year, it is estimated that up to 50,000 deaths occur in the United States from seizure-related causes including accidental deaths and Sudden Unexplained Death from Epilepsy (SUDEP). The mortality rate among people with epilepsy is two to three times higher than the general population and the risk of sudden death is twenty-four times greater. There is an urgent need for more research to determine underlying mechanisms and causes of epilepsy (seizure disorders) and SUDEP so that the risk may be minimized and eventually eliminated. Source: www.cureepilepsy.org

Excuse me while I rant and rave for a while...

November is epilepsy awareness month!! So, for the entire month, my blog will be devoted to epilepsy awareness and education. One of the reasons that motivated me to start this blog was to raise awareness of the most UNDER-FUNDED and UNDER-RECOGNIZED disease that effects millions across the globe. I am doing this not only in honor and memory of Karissa, but for all others who have lost a life to epilepsy or who are suffering from the disease. I think you will be shocked to learn some of the statistics. I know I sure was. The universal color for epilepsy is lavender/purple.

Halloween 2005

I know Halloween is  tomorrow but here are some pictures from Karissa's first Halloween. She was 7 months old.

 

Halloween Pj's!! Karissa with Grandma & Grandpa Booth

 

Karissa with her cousins Isaiah, Ella, Abbey & Sophia & Aunt Elissa

Ok, I am just gonna say it...

It irritates the h*** out of me when people complain about their kids or their mundane daily routines involving their kids. I want to throw perspective in their faces. Think about it. What if, in an instant, it was all taken away from you? The mundane routines, the crying, the "mommy this and the mommy that", the loud obnoxious toys, the lack of sleep, ect. What if one morning, you realized that you had slept until 7:45, only to realize that the reason you had slept so late was because your child had died in the early morning hours. I don't expect anyone to have the same perspective as me, unless of course, you have also suffered the unfortunate loss of a loved one.

I really am not crazy, I promise...

Sometimes, I stand in her room just staring at her empty bed, hoping, she would be there. Can't I just stare her back into existence? Why won't that work? Sometimes, I open her closet door or a drawer to her dresser, just wishing I could chose her outfit for the day. Just hoping to turn around and see her standing there. Or, sometimes I will go in her room and push one of the buttons on one of her toys just to remember the sounds that used to fill her room when she was alive. I still look at the clock at specific times during the day: 7:30 am meds, 9:00 am short nap before school, 10:40 am leave for school, 1:40 pm pick her up from school, 2:15 pm another short nap or a walk to help her unwind, 7:30 pm meds and bedtime routine which always involved bath, stories and lots of snuggling. When I am driving, I still find myself looking in the backseat from time-to-time, wishing she was there but only to realize that she is not. And won't ever be because she in NEVER coming back. Almost 16 months later, it still can seem very surreal. Like it never happened. Like I am going to wake up from a VERY BAD dream. Like I am just going to walk in her room and see her sleeping in her bed or playing with her toys.

Tears for Two

Lately, the tears are flowing not only because I miss Karissa, but because my heart literally aches, ACHES, for another child. It hurts. I cannot even begin to explain. I know that having another child will never, ever replace Karissa. But, what I do know is that it will help me to heal and move forward.

A few weeks ago, Gaylin, a very close friend of mine, was here visiting some family. I was able to spend some time with her while she was here. We were upstairs standing right outside of Karissa's bedroom, still untouched, since July 8th, 2008. Although I do bring fresh flowers to her room almost on a daily basis, her room is exactly the same. I recall telling my friend that the day I will go through her room will be the day we have another child. I also imagine that will be the same time at which I will be able to return to Target.

Anyhow, two days after Karissa died, Mark and I took a short walk around the block. Actually, we would do this quite a lot right after she died. For the first month or so, there were always people at our house, morning, noon and night. While we welcomed the company and the distractions, sometimes we just wanted to be alone together for a while. So we would go for little short walks. During the walk we took 2 days after she died, I vividly remember saying to Mark "we need to have more kids. Karissa would want us to have more kids. If she were here she would tell us to have more kids. That would make her happy." Karissa not only loved people, she LOVED kids.

So, these days I am crying not only for the loss of my daughter, but for the anxiety of a future that is unknown to me. If someone were to come from the future and tell me that we would never have more children, I don't know what I would do. Although this is hard for me to write for the whole world to read, I feel that my life has stopped since Karissa died. Like my life is on hold. Like I am waiting for it to start up again. It is horrible. I hate being in this place. Mark says I need to live in the moment. True, but I don't know how to do that. I feel that having another child, or children, if we are lucky, will give me my life back. I loved being Karissa's momma. It gave me so much joy and happiness. I need to have that again.